Do I or Don't I

]I'd say you do. Especially when you take pred. and feel so much better and after dropping down (I presume very quickly) the symptoms returned. I'd say go back on a dose were you feel ok then reduce very slowly espcially after you get below 5mg (at 5mg drop by 1/2 mg every 4 to 6 weeks)

Hi Shirley,

Welcome to the forum! You will find loads of info here about PMR including stuff from people just like you.

Your symptoms are very typical of PMR - the type of stiffness and pain in the mornings and not being able to lift your arms above your shoulders. I had similar symptoms for a few years before getting a name for the problem. I, too, had absolutely normal blood results with very low values for the inflammatory markers which most doctors regard as essential. One of my GPs told me that they had been told by the rheumatologists that a rapid response of the symptoms to a steroid trial is regarded as being reasonable confirmation that what you have is PMR rather than some of the alternative diagnoses which need to be ruled out and which would not respond in the same way.

You don't say what dose you started on but since your GP is obviously aware of PMR (many are not) I imagine he started you on 15-20mg? To reduce to 2.5 mg in 4 months is much much faster than most people achieve without a return of the pain. PMR is reputed to \"burn out\" in a couple of years on average - I had had it for nearly 5 years with no remission. I have reduced from 15mg/day down to 13mg taken every second day over 8 months, with a hiccup in the middle last November when I was down to 5mg but had to go back up because the pain started to return. This is not unusual. Many of the people on this forum have been able to get down to about 7mg/day and then start to struggle with the reduction and there are several versions of very gradual reduction programmes under discussion in the forum at present. Many others get stuck at 10-12.5mg.

There is no cure for PMR - the steroids merely manage the symptoms to allow relatively normal life. Even if the dose isn't being reduced, any form of stress such as overdoing it, illness, cold weather and stress of any sort may bring back the symptoms on a short or longer term basis meaning the dose may need to be upped temporarily. Reduction that is too fast will result in one of two things: either you will get symptoms due to the reduction being too fast or you will get a return of the PMR. It is not unusual that if the PMR flares up again it is more difficult to reduce the dose the next time so there is a lot to be said for NOT panicking and trying to get off the steroids too quickly.

The suggestion has to be: yes, given your symptoms and response to steroids, you almost certainly do have PMR, particularly in view of the fact you already suffer from an autoimmune disease if you have MS. And you now need to up the dose of steroids to the last level at which you had no symptoms. Then, having allowed a period of stabilisation, you could try to reduce again, but only by the smallest amount you can manage given the tablet sizes, certainly not more than 1mg at a time, allowing a month or so between attempts. If you read through this forum you will find lots of advice on reducing - everyone is different and responds to the steroids differently. I appreciate your fear of them as you will have had quite high doses with the MS and high doses are accompanied by risks and side-effects. You may be fine at 5mg but not below - but not everyone has bad side-effects and a 5mg dose is similar to the body's normal level of cortisol.

The decision you have to make is, quite simply, whether you want to be reasonably pain-free and able to function on steroids or whether you would prefer to have the pain and not take steroids. There are other medications if absolutely essential but they too have nasty side-effects and are not necessarily as effective as the steroids (there is information about them elsewhere on this forum as well as dealing with PMR without steroids). I think you have been very lucky in having a GP who worked on the clinical picture and identified what was causing the problem despite the normal blood tests as there are people on this forum who have spent months unable to get out of bed never

Thank You so much for your replies

I know I am probably being silly by taking myself down and off steroids

maybe I need to have a rethink because I would hate to have that stiffness and severe pain back.

Another question I read somewhere that Lipitor is a factor

I have taken Lipitor for 3 years to keep my colesterol down

once again thanks

Shirley

Hi Shirley (my namesake!)

You query whether Lipitor could be a factor in your pain and certainly statins have been raised as possible culprits on this forum many times. Apparently there is a test available to see whether Lipitor is having adverse effects - see Rick's posting under the subject \"New to PMR\" (6th listed experience). You will see he stopped Lipitor for a while but his test proved negative and he is back on it. Although he is in the States, one would hope the same test is available in this country.

I so understand your doubts about taking steroids but it really is a case of whether you are still having a good quality of life with your pain.

One very important thing to bear in mind, especially as you have reduced to such a low dose so quickly with returning pain, is that some people with PMR develop GCA (and the other way round) so if you suddenly develop head and/or jaw pain and any vision problems whatsoever, you will need an immediate increase to high dose steroids to get the inflammation under control in order to protect your eyesight.

Very best wishes and do let us know how you get on.

MrsO

Hi Shirley,

I've been in statins for several years and when I first complained of dreadful muscle pain, stiffness and cramps my doctor did a blood test to see if it was caused by the statins. The test came back negative but she changed my statin to Lipitor (was on Simvastatin before) and so far I haven't had any problems with this one. I was quite relieved to exclude statins as a cause of the pain and although my ESR and CRP blood results were low, 24 hours on Prednisolone and the consequent 'amazing' results convinced my Consultant that I was suffering from PMR. I think the jury is out on a link between statins and PMR but I don't really have a choice, my cholesterol is uncontrollable without statins, so I take what I'm given and mostly enjoy a normal life. I do hope you soon feel better. Take care.

Lizzie Ellen

Even 'ON' statins - first time I don't bother to preview and look what happens :lol:

Hi Shirley,

Sorry to hear about your discomfort and suffering.

The blood test I had to see if a statin was causing my muscle pain was CK and Aldolase (or CPK and Aldolase). I would provide a link with info, but this reply wouldn't show up until approved by the moderator. Just 'Google' \"CK and Aldolase\" and the first link offered should give you some info on this test.

Hope this helps.

Hi Everyone

Thank you so much for your support and advice it has really helped me.

Until my GP mentioned PMR I had heard of it but didn't know how it affected people ( I do now ) what a horrid condition to have and I feel for all of you.

As far as Steroids go I hate them but I am very grateful for their help this time.

I have had MS since 1990 and at various stages over the years I have taken prednisilone

I would get the moon face and the huge weight gain but most of all they sent my heart racing, I just don't tolerate them very well.

Because I am feeling the affects of coming down off them too quickly I have gone back up to 5 mgs to where I was feeling quite comfortable.

I will get my GP to check if the statins have anything to do with it,

once again thanks everyone

Shirley

Hi Shirley,

When you go to the GP you could also ask about taking your steroids on alternate days - especially as you seem to have found that at 5mg you do quite well. I posted some time ago about this form of therapy (ADT, alternate day therapy) which is used in other conditions for longterm low dose steroid use as it is associated with far fewer side-effects. I wrote to the PMR NE support group queen (MrsK on this forum, a mine of info) and asked her if her consultant who has a special interest in PMR had any opinions about it being used in PMR. His response was that he recommends anyone who is down to 10mg/day should try it.

It is based on the concept that the inflammatory effect of the steroids lasts much longer than the steroids remain in the blood so as you proceed through the 48 hours to the next dose there is no prednisolone in the blood and your own system is stimulated to produce cortisol. Some PMR patients do not get enough effect on the second day (everyone with PMR is different, in symptoms, in response to steroids and duration of the disease!) but I find that I am doing well at 13mg/2 days and have noticed that although there is a bit of pain and stiffness in the late afternoon of the second day, I have no problems getting up the next morning - which suggests that my body is now starting to produce cortisol itself.

If you are already on steroids at 10mg/day or less you can change to ADT by increasing the first day dose by a small amount and decreasing the second day dose by the same amount so the same total dose over 2 days is being taken. E.g. if you are on 10mg/day, take 11mg on day one and 9mg on day two, then 12mg on day one and 8mg on day 2. Continue this way, with a few days between each change, until you take 20mg on day one and nothing on day two. I did it in 2.5mg steps and quite quickly as I had not found the website which provided these instructions at that point but had no real problems doing so.

If you (or your GP) don't feel this is appropriate, don't try to decrease from the 5mg daily dose by more than 1mg at a time and allow a few weeks to stabilise between attempts. I've been decreasing the ADT dose by 0.5mg at a time as I have 5/2.5/1 mg tablets which makes that possible and have got lower than I have before without any return of the pain and stiffness. I also don't have any side-effects worth mentioning - I put on a bit of weight and had peach fuzz on my cheeks but that went once the dose went down and has gone even more since I started the ADT.

Good luck and let us know how you get on as everyone who joins in this forum provides info which is helpful to someone else. You were lucky in having a GP who was on the ball but loads of us have fought not only GPs but also consultant rheumatologists to get treatment. And you know how incapacitating the PMR is! I was told I was too young (nice thought but not very helpful!) and my blood values are not just normal but low so \"it can't be PMR\" - until like you I was fine in less than 24 hours on 15mg steroids!

EileenH